Welcome to The Chromosome 18 Registry & Research Society
6302 Fox Head San Antonio TX 78247 210-657-4968
The Chromosome 18 Registry & Research Society is a non-profit educational/research organization whose purpose is:
- to locate persons with chromosome 18 anomalies;
- to educate the families as well as the public about the prognoses and treatments of these disorders;
- to encourage, conduct and publish research in areas that impact our families; and
- to link affected families and their physicians to the research community.
The anomalies of chromosome 18 cover a wide range of disorders. These include:
- Trisomy 18, in which there are 3 copies of chromosome 18 instead of the usual 2.
- 18q-, in which there is a missing piece of the long arm of chromosome 18.
- 18p-, in which there is a missing piece of the short arm of the chromosome.
- Ring 18, in which the usually linear chromosome forms a ring.
There are also many other combinations of deletions and/or duplications. This wide range of variation also leads to a wide range of symptoms, from no obvious problems, to profound physical and mental difficulties. There are no cures, but therapies aimed at specific problems can and will be developed.
The Chromosome 18 Communiqué
is a quarterly newsletter which keeps members informed about the organization news, research progress, social and political issues that affect our members. Contributions of articles from members are encouraged.
The Chromosome 18 Parent Network
is a list of affected families, including addresses and telephone numbers. This list will enable families to communicate with each other directly and informally. This list is distributed only to affected families. It will not be released for public or commercial purposes. Click here and fill the application form if you wish to be included on the list.
The Chromosome 18 Bulletin Board
is a forum for online disscussion about any issues of concern to families affected by chromosome 18 abnormalities.
The Annual Conference
is sponsored by The Chromosome 18 Registry & Research Society for the families of affected individuals. The conference provides families with an opportunity to meet and enjoy each other's company for a few days, while at the same time, learning about topics which are relevant to the health of their special child as well as their whole family.
Here we are at our 2nd Annual Conference in San Antonio, Texas, July 1995.
1996 Family Conference
June 19-22, 1996 in Memphis, TN. Contact the office for more details.
For an additional information on Chromosome 18 Registry please contact Jannine Cody ( cody@uthscsa.edu ) or any other member of the
Board of Directors and Medical Advisory Board
Useful links:
- Studies of the 18q- Deletion Syndrome at the Robin Leach Laboratory, UTHSCSA.
- SOFT - Support Organization for Trisomy 18 and 13
- "The Mission", a quarterly publication of the University of Texas Helth Science Center at San Antonio contains an article about some of the people involved in a research project aimed at understanding the 18q- syndrome. Click here to link to that article.
- Links to various genetic resources on the Internet
- UTHSCSA Genome Center Home Page
This page is maintained by Vladimir Pekkel,
vladimir@mars.uthscsa.edu